adrenal glands | Cushing's Bios

Brain tumour survivor draws comfort | Toronto Star

June 16, 2015

MaryO Adrenal, Adrenal Surgery, News Items, Pituitary, Pituitary Surgery, radiation, Treatments ACTH, adrenal glands, Adrenocorticotropic hormone, Brain tumor, cortisol, Cushing's disease, pituitary tumor, radiation 1 Comment

Erella Ganon has a brain tumour, and she wants everyone to know about it.

The 56-year-old woman has had brain surgery three times, had both of her adrenal glands removed and been through multiple bouts of radiation.

Ganon chronicles her health journey through a series of images in what she calls a “graphic autobiography.”

It’s a habit she got into as teenager. Every day she uses fountain pens to draw a picture of what she’s experiencing.

For the past decade those pictures have illustrated her battle with Cushing’s disease, a rare disorder that makes her pituitary gland release too much ATCH (adrenocorticotrophic hormone), stimulating the production of cortisol, a stress hormone, creating tumours.

Ganon shares her images on an online blog that in turn offers inspiration and comfort to others struggling with illness.

The hand-drawn pictures present an open and often humorous look at life with disease. The images are instantly relatable and depict everything from hair loss to hospital food.

“Everybody who’s touched by catastrophic disease… has a feeling of powerlessness, but the artwork and putting it out there is the opposite of that,” said Ganon.

via Brain tumour survivor draws comfort | Toronto Star.

Did She Have Cushing’s?

April 12, 2015

MaryO Carcinoid, Ectopic, Lung Surgery, Other Diagnosis, Pituitary, Treatments 24-hour urinary free cortisol, adrenal glands, bruising, Carcinoid, Carcinoid Lung Tumor, cortisol, cushing's syndrome, endocrinologist, fatigue, female hormones, hair, hair loss, lung, malaise, menopause, MRI, obesity, pap, periods, pituitary, Prednisone, skin, surgeon, thyroid, transvaginal ultrasound 1 Comment

Did She Have Cushing’s?

DR. JEFFREY MILLER, FOR THE INQUIRER

POSTED: Sunday, April 12, 2015, 2:50 AM

By the time A.A. arrived in my office, she had spent almost a year looking for answers.

In November 2012, she was 45 and struggling to lose weight and keep her blood pressure down. What sounds like a common scenario, however, was anything but.

A.A. was experiencing fatigue and malaise, and the area around her eyes bruised easily. Another puzzling symptom: She said she was acutely aware of her neck. It wasn’t pain, but awareness. She was losing more hair than usual in her brush and had stopped menstruating, and her skin broke open easily. Her primary-care physician thought it was early menopause.

She asked family and friends, but no one had such symptoms at menopause. She was increasingly self-conscious as she gained weight. Her primary-care provider referred her to an OB/GYN, and a variety of tests came back normal, including a pap, thyroid, female hormones, and a transvaginal ultrasound.

Worst of all, A.A. struggled emotionally. She felt as though she were in a constant state of agitation, with depression and anxiety. A.A.’s symptoms slowly took over her life. She was becoming a person she hardly recognized.

In July, she ran into a friend who was a nurse. Noticing the puffiness of her face, the nurse asked A.A. whether she was on prednisone. Learning she wasn’t, the nurse suggested A.A. might have Cushing’s syndrome, which results from too much cortisol in the body for long periods. It can be caused by taking a corticosteroid, like prednisone, or by something inside the body signaling the adrenal glands to produce too much of the hormone.

A visit to an endocrinologist confirmed the diagnosis after a 24-hour urine-cortisol test, and an MRI appeared to reveal a small adenoma on the pituitary gland. The endocrinologist referred her to Jefferson to see a surgeon.

Although she was not looking forward to brain surgery, A.A. was relieved to have an answer.

But neurosurgeon James Evans, Jefferson’s director of pituitary surgery, did not think the Cushing’s was caused by the pituitary adenoma. He ordered an additional MRI and blood work, which confirmed his hunch, and he referred her to Jefferson Endocrinology for further detective work.

Solution

When A.A. walked into my office, she was extremely stressed and exhausted. I ordered a chest CT, which revealed a nodule. But it did not fluoresce during a nuclear medicine test, as it likely would have had it been causing the Cushing’s. Next up was a series of scans, but all came back clear.

I still felt the tumor should come out and referred her to cardiothoracic surgeon Scott Cowan.

Three days after surgery to remove one lobe of her lung and the tumor, A.A.’s face already was noticeably slimmer.

Her Cushing’s was caused by a carcinoid tumor the size of a pencil eraser in her lung. The tumor – although not large enough to fluoresce during testing – had been signaling her adrenal glands, which produced enough cortisol, the fight-or-flight hormone, for 24 people.

Cushing’s accounted for all her physical and emotional symptoms. The syndrome can be missed because it mimics obesity in many ways.

With the tumor out, her adrenal glands would effectively go to sleep. She’d need prednisone, which would slowly be tapered over the next year. Fortunately, A.A.’s lymph nodes were clear, and she did not need radiation or chemotherapy.

Over the next year, A.A. got her life and her body back. By January, A.A. was completely off prednisone, feeling and looking like herself.
Read more at http://www.philly.com/philly/health/20150412_Could_brain_surgery_solve_her_baffling_symptoms_.html#xPCBW4wRoFxTCWDh.99

Catherine B, Pituitary Bio

June 25, 2014

MaryO Addison's Disease, Adrenal, Adrenal Insufficiency, Cyclic, Hashimoto's, Hypothyroidism, Other Diagnosis, Pituitary, Pituitary Surgery, Thyroid, Treatments, Video acne, ACTH, Addison's disease, adrenal fatigue, adrenal glands, Adrenal insufficiency, Alaska, antidepressant, anxiety, bilateral adrenalectomy, BLA, blog, Blood pressure, cortisol, Cyclic, depression, diarrhea, Dr. Theodore Friedman, endocrinologist, exhaustion, hair, Hashimoto's, Hormone, hyperplasia, hypoaldosteronism, hypothyroidism, iron, Ketoconazole, low ferritin, MRI, nausea, neorosurgeon, neuroradiologist, NORD, pain, pituitary, pregnancy, straie, Stretch marks, testing, video, vitamin D, weakness, weight 3 Comments

I’ve had random symptoms off and on for years (almost two decades now, from about the age of 15) but didn’t realize they were related to illness, or that I had one overarching disease causing them all.

Looking back, the onset of my disease was in my teen years. I gained more than 60lbs in roughly a year’s time without changing diet or activity level. I developed stretch marks that ran from my knees to my elbows (and everywhere in between!). I started losing my once-thick hair. I developed horrible acne. I went from being an early morning riser to staying up late at night because I was wide awake, and waking often throughout the night. I went from being happy overall to being anxious and depressed for no apparently reason (and medication had no effect on either). I was told it was either all in my head or all my fault (by varying people, some directly, some implied) and I internalized that and just assumed I was too lazy and had bad genetics… I TRIED to exercise but would feel so sick afterwards that I couldn’t make any gains, I joined a gym and put myself on a diet in high school but none of it made any difference. When I brought up my symptoms to doctors, they could never put it together, often blamed me for them (Just diet and exercise and it’ll go away), and sometimes treated me like I was just plain crazy. I still don’t go to doctors unless I have to because of those experiences.

After getting married, I had had some complicated pregnancies…but it was more than that. I would get flank pain and drop into “lows” that I didn’t understand, complete with feeling cold, diarrhea, weakness, exhaustion, nausea, loss of appetite, and extreme weight loss (muscle loss, more like it). I had high cardiac output but low blood pressure and a high pulse rate. I’d go into tachycardia (140 bpm +) for NO apparent reason and had all kinds of cardiac monitoring done. My blood pressure was labile, but usually low, and still I’d end up with severe complications. Breastfeeding wasn’t going well despite the “mechanics” and flow being there…my babies were never satisfied and I always felt sickly. The differences were drastic (but a bit graphic to share here publicly). I seemed to get pregnant at the drop of a hat (opposite of the norm for Cushie women), but my body seemed unable to deliver on it’s own. My body just didn’t react like it should to anything. I even once had an episode post-partum that now I know was likely some mixture of adrenal insufficiency and/or my hypoaldosteronism. I was left alone to sleep it off (just thinking about it now scares me), but I didn’t know any better at the time.

Then about 3-4 years ago I hit this point where I just had the feeling that if I didn’t get whatever was going on under control, I’d end up with something more permanent and dangerous (like cancer or diabetes). I still got seemingly random symptoms but I had too many of them, and they were getting worse. I also started to notice that my good days and bad days seemed to come in cycles. 3 days, 3 weeks…I’d be good for a while, then worse for a while, then good for a while. I had already eaten “clean” and kept myself active, so I decided to try “nutritional balancing therapy” and started taking a karate class multiple times a week (burns TONS of calories, fyi). They ran some tests for various vitamins/minerals, and said I had adrenal insufficiency. The diet I was put on was a higher fat (good fat), higher protein, TONS of veggies diet (basically we just cut out my grains/starches and added in more fat) but between the diet and the exercise, I became so ill I couldn’t get off the couch for about 4 weeks. I had to give up both and it took some time to recover, but I never got back to where I had been, not even close.

I started studying the natural healing term “adrenal fatigue” and came to the realization that I had done everything to correct AF but was still going downhill. I had tried supplements, diet (years of it), everything. I became pregnant unexpectedly and was active, even tap-dancing with a major part in a musical at 20 weeks pregnant. I would have these ups and downs that seemed random, but when I finished the musical, I hit a new low and never seemed to come back from it. I just became more and more exhausted. To the point that certain days I could *feel* the energy it took to hold my head up to watch a movie with my kids. The CNM and OB both said I was just depressed and upped my dose of Vitamin D. They wanted me to go on antidepressants, and I refused. I knew the difference between not wanting to do things and not being able to do them. I called a doctor that specialized in Adrenal Fatigue in California after having read through his website, and he basically said that I would continue to get worse, but that he wouldn’t treat me because of my pregnancy. No help, no suggestions, he told me “come see me if you make it out alive.” I obviously needed outside help from a true expert.

I had joined an Addison’s support group online about this time, and they helped me learn a lot about AI and Addison’s, about symptoms, testing, about Hashimoto’s, etc. I am SO grateful to these women who supported me and taught me much. They never questioned if I was just depressed or if I was really sick, and they were so kind they WERE the sanity that I needed so desperately. I was getting nowhere with local doctors, my husband believed me and was as helpful as he could be, but it was taking a big toll on us, and when we asked for help from our local church leaders with cleaning our home because I no longer could do it (and my husband was so overwhelmed doing everything by himself), we were threatened as a family and refused help. I was desperate; I was hurting. My whole family was struggling because of this disease and the treatment (and lack thereof) we’d received from doctors and so-called friends.

These Addisonians had been talking a lot about one specific endocrinologist that specializes in pituitary disorders (who also happens to be in California). In complete desperation, I emailed him, knowing the chances that he’d take me or that I could even get in to see him before delivery (due to travel restriction based on gestation) was unlikely. But I was scared of what a delivery with untreated Addison’s might bring (I knew the stats and knew I didn’t trust the local OB), so I emailed explaining my situation and sent my current lab work (I had to go to my GP because my OB wouldn’t even test my thyroid or iron!). I knew it sometimes took weeks to get a response or get in to see this doctor 3 states away, but I sent the email on February 8th, and heard back via email that same night from his office lady. She was sure he could help me, and suggested I schedule an appointment right away, and was waiting to hear back from him directly. He responded that he did see something amiss in my lab work, and I was scheduled for an appointment and buying plane tickets. My appointment was on Valentine’s evening and a friend flew with me because I was too weak to do it alone, and because my brain was too foggy to feel comfortable understanding and responding to everything in the appointment, not to mention I was super pregnant with my 6th child!

I went in SURE I had Addison’s Disease, or at least a form of adrenal insufficiency, and even tried to argue that fact. I came out with a LOT of testing for Cushing’s Disease. It was, in fact, the low cortisol periods that I was noticing, but it was being caused by periods of high cortisol. You see, the cortisol takes a big toll on your body and overrides the normal feedback system of your pituitary and adrenal glands. While the tumor is actively pumping out ACTH, it can shut down your own pituitary’s normal production because the pituitary feedback says there is already too much cortisol in your system. Then, if/when the tumor “kicks off” (who knows why they do this), your pituitary is in a lazy state from not having been working and it can take a while for it to kick back in. This can bring life-threatening lows, but generally it just brings low-cortisol symptoms which are still uncomfortable.

I was unprepared for the change in direction at my appointment. I had the right system and hormones, but I was looking at it backwards, and the more I learned about cyclic Cushing’s Disease, the more sense it made, the more things clicked together, and the more I understood about my past and present symptoms. I have cyclic Cushing’s Disease. I had read up a little on this about 10 years prior, when my mother-in-law had died from untreated Cushing’s (she refused treatment and was a stubborn, intelligent women who got her way). I had read through some information with my husband at that time. We had concluded that it was a possibility, but I didn’t have enough of the symptoms (maybe half?) and decided that I wasn’t nearly sick enough for that to be the problem. How wrong we were! I certainly wasn’t as bad as many, but I found that the downhill turns were often sudden and drastic, especially in the more recent years.

At my appointment I was also told I had hypothyroidism. He ordered more of those tests (to get a trend) and an antibody test. It was found I have Hashimoto’s Thyroiditis (an autoimmune thyroid disease) and was put on thyroid medication. My ferritin level (stored iron) was so low it was in single digits (he wants it around 60) and he said that had I not been flying home the next morning, he’d have had me in the hospital for IV iron infusions. Needless to say, I was put on iron –lots of it. My vitamin D was still lower than he’d like despite having been on treatment, so he switched me to 50K iu’s of D3 weekly (My OB had chastised me repeatedly for taking D3 instead of D2; Ha ha!).

I had to wait for a while after my pregnancy to allow my body to normalize before doing my Cushing’s testing. I first tested by date (randomly, basically) and got a few marginal highs, but mostly normal test results. My pituitary MRI was read clean. Dr. F told me he didn’t know what was wrong, but that it didn’t look like it was Cushing’s because of the testing. I was not prepared for that, and just ended the conversation in an emotional mess. I was emotionally, mentally, and physically exhausted and didn’t plead my case. I didn’t have insurance or the money to test more, even though I was pretty sure I needed it. And looking back, had I asked, he probably would have obliged.

I decided to again try natural healing methods. Nothing worked, and some things (extended juice fasting, for instance) actually made me much worse. Every time I hit another “low”, it seemed to become my new normal…and that was scary. I kept losing more energy and strength, more of my mental ability, and each time I couldn’t imagine it getting worse, yet it always did. (I still haven’t learned this lesson!)

About a year later, after a lot of prayer and thinking, after I’d exhausted most natural treatment methodologies I felt willing to try, I realized I did indeed need to go back and push for further testing, and test by symptoms. Mentally and emotionally I was in a much better place, and while I had recovered a bit after my delivery, I had started to again slide downhill despite my best efforts. I came up with a game plan, and the hope of it made the effort required seem possible.

I emailed Dr. F to ask about further testing, this time by symptoms, and there was no pushing or arguing necessary! He gave me more sensitive testing this go round, and told me to test as much as it took. He believed me! It was as if the way just opened up for me this time. I was uninsured, but I applied for the Cushing’s Assistance program through NORD (The National Organization for Rare Disorders) and was accepted. They offered to cover the costs of testing, doctor’s appointments, and travel needed for the same, that would lead to a diagnosis of Cushing’s Disease. I was in public when my husband called and read me the letter, and I started bawling right then and there in the shopping isle. It was an answer to a prayer I didn’t even think to voice. I then called to share the news with family and friends and bawled again, scaring yet more customers! Having no insurance, this made everything possible.

Tracking my symptoms wasn’t a very easy task. I went totally OCD on them, and still I was only somewhat successful in my efforts. I could get the overall trend, but the day-to-day was confusing as all-get-out. My testing was also complicated by living in Alaska. I could only turn in tests 4 days a week because they had to fly out to the labs in Seattle, WA and beyond. It took about a month to get each result back. Add to that a head cold that killed my cortisol levels for 6 weeks, and it took me a few months to get sufficient high labs even with my 2-page-wide spreadsheet of symptom data.

In that time, I also made friends on the Cushing’s-Help website and Facebook groups. I learned a LOT of things from them, and one friend in particular likes to “read” pituitary MRI’s the way I like to “read” fetal ultrasounds. She looked at my previously “clean” MRI and said that in her lay opinion, it was anything BUT normal. As a favor, her neuro-radiologist also took a look at my MRI, and was so kind as to send back pictures with ARROWS of pituitary adenoma’s and suspicious areas on my MRI to forward on to my endocrinologist. As it turns out, my doctor hadn’t read the disc himself and had just read the radiologist’s report. He looked at the disc and agreed it was not normal, then sent me a message stating I needed a new MRI (it had been over a year at this point and my previous MRI still had some of that post-partum “rainbow” shape to the pituitary) and that it should be read by a neurosurgeon this time around. JOY OF JOYS! This brought me even more hope! He said SURGEON, not just himself…that meant I was getting so close to that diagnosis and surgery clearance –to getting help.

I scheduled my MRI trip (can’t do a 3T dynamic here), and decided to schedule a face-to-face with my endocrinologist again while in the same city. NORD paid for the flights, reimbursed me for the cost of my doctor’s appointment, paid for the MRI, and paid for my hotel room. My husband came with me this time, and it was the best doctor’s appointment I’ve had in my life. I was still nervous that somehow it wasn’t enough, or that the MRI done the day before my appointment would miraculously have become normal again. That was not the case. My MRI showed two possible adenomas on opposite sides of my pituitary amongst other things, and my 7+ diagnostic-level high labs were sufficient…and it felt AMAZING!

Who knew we’d be so excited to hear I was diagnosed with a deadly disease? That we’d shout for joy and clap our hands at finding multiple tumors in my head? I had a smile that wouldn’t go away. The medical student shadowing my endocrinologist hadn’t seen the diagnosis side, where patients are so relieved to have an end in sight, to finally be getting help and have a chance at getting better, that they are happy! I also wore my “Does my pituitary gland make me look fat?” shirt to this appointment, so we were joking, taking pictures, and having a grand old time. He gave me permission to share the picture of us, and without prompting pointed to my head for the next picture saying, “It’s right HERE!” My endocrinologist is generally stoic, quiet, caring yet professional, dealing with very ill people with a very serious disease and he is often their last hope at life…so I feel myself privileged to have had the opportunity to see him in-person for my diagnosis appointment, and to see this other side of him. I hope he felt our gratitude as well.

The “pick whose going to cut into your head” decision took a while. I was offered 100% coverage through a quality hospital and with a quality neurosurgeon for anything done at their facility, but the endocrinologist there wanted me to start my testing process ALL over again with them, at my cost at home. I was not willing to start over after all that hard work and with as quickly as I was deteriorating, so I decided to wait till January when the new health coverage laws were in effect and I could again get insurance without preexisting conditions clauses. I was able to be referred to my first-choice of neurosurgeon’s and placed on Ketoconazole to help lower my cortisol while I waited.

I had pituitary surgery on February 5,2014 (I am writing this 4 months post-op). They were able to find and remove the more obvious of tumors on my MRI, and explored the rest of my gland, finding no more tumor tissue. My pathology report came back as “hyperplasia”, meaning I had a bunch of individual scattered cells that were a tad overgrown instead of a solid, encapsulated tumor. This kind of tumor has a very low success rate, since the entire gland can be diseased, but it can be impossible to see and remove every one of the scattered cells. We knew early on that it didn’t look like remission based on my symptoms and post-operative lab results. I was off my replacement hormones within a month, had to wait for my cycles to normalize a bit (I guess all that pituitary fileting was noticed by my pituitary even if I wasn’t cured! lol) and then I could begin retesting for re-diagnosis.

In April I had a post-op MRI and follow-up with my neurosurgeon, who said I did not have a visible target on MRI, and with pathology report of “hyperplasia,” I am not a candidate for repeat pituitary surgery or radiation therapy. We now know that a bilateral adrenalectomy (BLA, the surgical removal of both adrenal glands) is in my near future…but I need a multitude of lab tests to prove I need it, and give a surgeon enough reasoning to permanently remove two very vital little organs and put me on life-sustaining medication instead. It is a drastic surgery for a drastic disease, but it is my best chance at a lasting cure with the least amount of hormone replacement and further damage to my other organs.

During this same trip, I was able to attend the Magic Foundation’s adult convention just a few hours from my follow-up appointment. What an amazing event. I learned many things, but perhaps more important to me, I was able to meet other people who had my disease, who understood what I was going through, had been there themselves, etc. They just knew! I felt at home. I consider it quite telling that they switched the schedule of the conference to part-days to accommodate our fatigue… The trip was hard on me, but I am SO glad that I went.

In May I started testing in earnest for my re-diagnosis. After intensive testing one week, and hit/miss testing the next (I was cycling lower and thus stopped testing), I now have 5 diagnostic-level high lab results. Because of the severity and permanency of this next surgery, my endocrinologist has asked me to continue testing. I will start testing again during my next high cortisol cycle in the hopes of doubling the number of diagnostic-level highs that I have and move on to the surgeon referral process. It’ll take a couple of weeks to get my lab results back (Oh, the agony!), and another couple of weeks to get my endocrinologist appointment and surgical referral if I do indeed have sufficient highs. I’m *really* hoping he won’t want me to go on medication prior to surgery as I’d like to move forward towards a permanent cure and health! Not to mention, my deductible is met for the year, so this year would REALLY be nice on my already broken budget.

With the new goal in sight, and some diagnostic testing that proves I’m still ill, we are hopeful. I’m now nearly bedridden due to the physical exhaustion, but I’m starting to allow myself to plan for a near-future in which I am somewhat functional and active again. I can’t wait! Once again, it sounds silly to be so excited and wishful about having surgery to give me Addison’s disease, just as it was to be thrilled to be told I had a tumor, dreaded disease, and needed brain surgery. But, I’ve been sick for so long and becoming more and more debilitated and sick the longer this has gone on that I am excited at the prospect of any semblance of improvement, health and normalcy! (Okay, within reason…I am well educated and using logic, etc on this, but…YAY!) I can feel it is within my reach again. I’m on the path and moving forward.

———————————————————————

Here is Magic’s video of me:

And the picture I spoke of in my story is attached (Dr. Friedman did give me verbal permission in-person to share it online –facebook, etc. I imagine he’d be fine with it published in an email?)

I will include a before/after onset collage of pictures as well. Use whatever you like.

Catherine blogs at http://muskegfarm.blogspot.com

Andrea P, Steroid-Induced Cushing’s

December 13, 2013

MaryO Addison's Disease, Steroid-Induced, Thyroid abdominal hysterectomy, Addison's disease, adrenal crisis, adrenal glands, Adrenal insufficiency, atrophy, bi-pap machine, bone density, bone fracture, Buffalo hump, cold sweats, Conditions and Diseases, cortisol, cushing, cushing's syndrome, depression, Endocrine Disorders, endocrinologist, energy, fat, Health, hyperparathyroidism, intern, low oxygen, Medic Alert bracelet, medication, migraine, miscarriage, nausea, Neurologist, osteoporosis, PCP, pituitary, Prednisone, psychosomatic, rheumatologist, Sjogrens, steroids, stress, teeth, testing, thyroiditis, vomiting, wean, weight Leave a comment

What can you do when the cure might be worse than the disease?

“Have you thought of losing some weight? This would most likely take care of the many complaints you have.” The all too eager yet condescending young intern continued despite my blank stare, “Have you had a sleep study done?”

How many times had I been in this situation? Change the doctor, but keep me there, in the crazy patient’s chair. “Well, the patient has five children, a long history of miscarriages, a fairly recent history of a traumatic abdominal hysterectomy… couple these with the recent death of her father to cancer and basically all normal testing… clearly she’s a depressed, middle aged woman hitting the Ben and Jerry’s a little too much and addicted to Lifetime movies.” Or something like that.

What’s worse than the tiny intern with a huge ego, was the troll under the bridge. I still had to face my PCP who listened to me a little less than a mother who’s heard “Mommy, mommy!” for the hundredth time in an hour, from her 3 year old.

For the better part of two years, I’d seen her for so many things. Each time I’d ask her why my bones were breaking so easily. I told her I was shrinking, to which she replied “It’s impossible to shrink an inch and a half in a year.” Then laughter. I’d ask her why the nausea & vomiting, low oxygen, and migraines were there… all of this was ignored and off to another specialist I’d go (for a similar experience), with more Prednisone in hand. When she didn’t see hardcore proof (i.e. a lab tests or a specialist’s report confirming the symptoms in front of her) the things simply did not exist, despite glaring symptoms.

Another specialist I’d seen did care and did see the disturbing, rapid transformation and accumulation of symptoms, so he sent me to my PCP for testing. I later found out that this specialist feared all along what I had. He had been warning me that Prednisone was dangerous and he hated it. I didn’t. I loved it. It was the only thing that relieved my severe neuropathy pain, the nausea, vomiting and migraines. Without it, I was in the E.R. at least once a week.

I suppose I could cut the PCP some slack and say that every doctor, when they themselves are the young intern, dream about the day when they can show off their seniority and knowledge (let’s not forget power) in front of another young intern. I could say this, but I won’t. Not when I know there are the most wise, sympathetic, world renowned and respected doctors, who’ve been practicing medicine longer than most interns have graced this earth, yet they treat the interns (and patients) as equals. They remain humble.

No, this PCP had no excuse for demeaning me for twenty minutes in front of this man. Alas! She did finally do her job and gave me an exam. It took her less than thirty seconds to blurt out “OMG Andrea! You have Cushing’s Syndrome!” All of the cool was gone. She fumbled with her papers, stuttered, murmured to herself… She was a mess.

She left the room for ten minutes and returned more composed and more… herself. “Andrea, I’m sure you’ve read about Cushing’s Syndrome on the internet.” This sentence was delivered with the same tone and sarcasm as a Disney villain about to pounce on an unsuspecting bunny (or other furry creature… did I mention the “fur” I had sprouted?). She continued, “You have every symptom of Cushing’s Syndrome. The buffalo hump is huge and classic.” She went on about my symptoms. All of which I’d been begging her to look at before this appointment.

By the end of the appointment, she had decided that she’d need to talk to my then rheumatologist; I’d need all sorts of testing, and foremost, “You HAVE to get off of that Prednisone Andrea!” Certainly she knew I wasn’t convinced that her prescriptions of Prednisone were somehow my fault, however the wee intern might have sucked that one up. Perhaps he believed it was my rheumatologist that prescribed all of it; he did do his part as well. They were both in it together.

I left the office miffed and confused. “Well,” I thought, “Let’s go home and see what this Cushing’s is, on the Internet. Probably some sort of psychosomatic disease where you think yourself into the side effects of Prednisone.”

At the point where I began my Internet search, I had changed from an active, really attractive (I can toot my horn, ’cause it ain’t so now) about to be 40 year-old, homeschooling mom of five beautiful children. I was in bed for 3 weeks prior to my PCP appointment. I found out later that my family thought that this was it, I was dying. Indeed, I was close to death and it’s a miracle that I didn’t die.

I had gained 40 lbs. for which easily 10 of it rested on the top of my back. The Buffalo Hump. The rest was hanging out in strange pockets of fat all over my middle and face. I was disoriented and in cold sweats all of the time. Everything hurt.

On the evening of that fateful Friday after my PCP appointment, I joined a Cushing’s support group online. It took me three weeks to compose my introduction post because I had not the energy, nor the wherewithal to finish it. In the meantime however, I found out enough about Steroid Induced Cushing’s Syndrome to know that I was in big trouble.

Every bad side effect one can get from steroid use, I am getting or have. What’s worse is, my adrenal glands have atrophied. They won’t wake up and naturally produce cortisol that our bodies vitally need. Every organ and gland in our body relies on the production of cortisol. When you have Cushing’s, you’re in a real pickle Fred.

With me, I’m continually in either Cushing’s mode or Addison’s mode. Two opposite diseases. You’d be surprised at how many people in the medical field do not understand this. Most disturbing is how many endocrinologists don’t understand it. My body is used to high levels of cortisol so when I try to wean off and my body gets stressed, sick, injured, needs surgery, etc., I go into adrenal insufficiency with the chance of adrenal crisis.

Ahh, adrenal crisis! My nemesis! Is it? Isn’t it? Hospital? Just a Prednisone Boost? These are questions I ask myself daily. I was very near dying during those few weeks before I saw my PCP, because my body was literally shutting down. Again, I’m still amazed that I didn’t die.

Right. I realized for me, a person with autoimmune disease, with all sorts of crazy symptoms, weaning down to a healthy level of cortisol was going to take another miracle. Those message boards? Every time I went to send a personal message to a member that I could relate to in experience, they were dead. Dead. Young women, neglected by so many doctors who thought that they too, were fat and depressed.

Monday came and I called my PCP as scheduled. When she answered the phone she acted as if she didn’t know why I was calling. Before a minute was up, I realized she was getting as far away from admitting I had Cushing’s Syndrome as she could. Both she and my rheumatologist had been prescribing me prednisone without any solid diagnosis (at that point). Basically the Prednisone was completely unwarranted. She told me to wean off of the Prednisone and “Um okay?” then let the silence hang there. I was speechless (and as you’re well aware of at this point, is pretty darn near an oxymoron).

I took it upon myself to see an endocrinologist, who I owe my life to. He ordered a bone density test, a bunch of labs, told me to get a medical alert bracelet ASAP and a whole lot more. He was shocked that none of this had been done.

The bone density test showed that my PCP was half right, I didn’t lose an inch and half off of my stature in less than a year, I had lost two and a half inches. I began a strong osteoporosis medication. A little later, I was put on 5 liters of oxygen at night and as needed during the day, a bi-pap machine and I learned more about cortisol stress doses and began searching for new doctors.

For the next year and a half, I would see a total of 3 more rheumatologists, 5 neurologists and 2 new PCP’s. I was admitted to the hospital too many times to count. I saw 5 more specialists, wasted tons of money, precious time and was demeaned further than I could have ever imagined coming from people who are supposed to “Do no harm.” at one of those big name clinics. Same thing: fat and CrAzY. At the end of it all, I had given up hope. I was on more Prednisone than when I had first seen my endocrinologist.

My teeth had begun rotting because of the calcium loss and my Sjogren’s Syndrome did not help matters there. I had 6 extractions in 3 months and was never able to get back down to the 10 mg. of Prednisone I had begun with. Stress, illness and then having to let the beautiful eyes of our children watch it all…too much.

I saw my endocrinologist for a checkup and he yelled at me. I yelled at him. We both yelled together and then he picked up the phone in front of me and called a few specialists (the most-awesome-est specialists the world has to offer) and made me appointments with them. These doctors graciously took me on as their patient and began working as a team with my endocrinologist to get me off of this Prednisone.

Well, it’s been 8 months since that loud, intense “time of fellowship” with my endocrinologist. Despite the fact that my teeth have deteriorated to the point where I will have them all extracted on Jan. 2, 2014 (Happy New Year!)… and I found out I have both thyroiditis and hyperparathyroidism and well, a bunch of other … stuff. I’m due to wean down to 9 mg. of Prednisone on Thanksgiving day! I’ve lost a little weight. There’s so much to be thankful for!

I have lost much, but what I’ve gained in return, I would never, ever give up. My faith and that of my family’s, has grown in ways that would never have happened had I not gotten this dreadful disease. I found many things. I have found that my husband really means it when he says that I’m beautiful. My children mean it… I have what many have deemed, “The Ugly Disease” yet I feel more beautiful than I ever have. I feel more blessed than I ever have. Most importantly, I remembered and again found my hope, through faith.

Faith is the essence of things hoped for, the evidence of things unseen. When those of us with serious and chronic illness, have no faith in a Hope, we are dead persons walking. Had my endocrinologist not been divinely appointed to verbally kick my butt, there’s no doubt in my mind that I would not be here trying to type this story of mine.

I can’t write nor say a thing without a moral. So the moral of my story is this: know who and what your hope is in. Know what the unseen things are and have fat faith. Take your illness and use it. Use your life! It’s beautiful!

Article reposted with consent of the author from Have Faith: Cushing’s Syndrome

Melissa F, Pituitary Bio

November 19, 2013

MaryO BlogTalkRadio, Golden Oldies, Interview, MaryO, Pituitary, Pituitary Surgery, Success Stories, Treatments aches, Adrenal, adrenal glands, antidepressant, antipsychotics, anxiety, Bipolar, BlogTalkRadio, Bone marrow biopsy, bruising, cardiologist, cortisol, Cushing's Help and Support boards, depression, diabetes insipidus, dizzy spells, Dr. Martin Weiss, Dr. William H. Ludlam, fatigue, forum, Golden Oldie, hydrocortisone, interview, leukemia, MaryO, MD Anderson, meniscus, message board, mood swings, MRI, nausea, oncologist, osteopenia, osteoporosis, pain, panic attack, Philadelphia chromosome, pituitary, PMS, podcast, radiation, salt pills, tumor, USC, venous sampling Leave a comment

Melissa F was interviewed on BlogTalk Radio November 3, 2010. She has had pituitary surgery. Archives are available on BlogTalk Radio and on iTunes podcasts.

From the Clutches of Cushing’s

A journey through Hell… with a happy ending
by Melissa Fine

The most insidious aspect of Cushing’s Disease is, while it is attacking you physically, it is destroying your self-esteem, your peace of mind, your very spirit. That more doctors, psychologists, psychiatrists, drug, alcohol and weight-loss counselors (and the list goes on) don’t know how to recognize something that, in retrospect, seems so blatantly obvious is appalling—and not only tragic, it is, in my opinion, criminal. I often wonder how many Cushing’s victims we lose to suicide because they were not able to get a diagnosis before they lost the will to live… simply because no one thought to look for the definitive answer in their blood, urine or saliva. I am certain that Cushing’s isn’t nearly as rare as the doctors believe it is. What is rare is their ability to recognize it.

This is my story…

First, you need to know that I was always a pretty happy girl (though PMS- related mood swings have always plagued me). I come from a very close family, always had a lot of support, had a group of true friends I could count on, and was always very driven to accomplish my goals. I moved to Las Vegas from Southern California in 1994, right after graduating from UCLA, to move in with the guy who would become my 1st husband (Rat Bastard!). My goal in life was to be a writer, and within a month, I landed a job with a magazine publishing company and was getting paid to do what I love. You should also know I was always way too skinny. No matter what I ate (and I was a picky eater, but what I did like, I ate as much as I wanted of it), I was lucky to keep my weight above 100 pounds. I was happy if I could maintain 105 pounds, so I didn’t look so gaunt…

In 1995, I started noticing something wasn’t right with me. I had every reason to be thrilled with my life, but I was constantly blue. Down. Not tragically depressed—that would come later—but I just never seemed to feel happy. I also found myself complaining of body aches and fatigue all the time. And I kept noticing big, unexplained bruises on my arms, buttocks, and thighs.

In July 1995, I was covering the opening of a new casino/spa in Mesquite, NV. I came out of some exotic acupressure chakra-cleansing massage with one thought: I WANT BEEF! Now, the mere smell of steak would always nauseate me, but I was starving and steak was the only thing on my mind. I ate a 16 oz. New York Strip plus a ½-pound of crab for dinner. Woke up the next morning STARVING and ordered another steak to go with my eggs, hash browns, toast and pancakes, and devoured it all.

That’s when I knew something was really wrong.

Over the next five or so years, I went to many doctors with seemingly vague, unrelated symptoms. I was always famished, so by this time, I was 145 pounds. The depression was also heavier, but at the same time, I felt a constant sense of anticipatory anxiety, like something was about to happen. In less than 10 minutes, a psychiatrist labeled me with “bi-polar 2” and I was thrown on mega- doses of serious anti-depressants and anti-psychotics. I caught every cold, was always bone-tired, constantly in pain, and was finding it more and more difficult to focus on anything. I went on and off various anti-depressants, none of which seemed to work for any length of time. The consensus among the many medical minds was that I needed to diet and exercise.

2000 brought a lot of change—and not the good kind. I found yet another new “family” doctor. This guy, though, actually tried. He noticed, after running a blood panel and looking at my many bruises, that my red blood cells were “abnormal” looking and that my white blood count was up. Up enough that, just to be safe, he wanted me to see a specialist. He told me not to be worried that “oncology” was on the specialist’s wall… he was just really good with blood.

By late August, I was in the oncologist’s office. After looking at more lab results, he promptly scheduled me for a bone-marrow test—which, in his opinion, was just a formality. He told Rat Bastard and me that I definitely had leukemia. My soon-to-be ex-husband asked him flat out: “Is there any chance that this could be something other than leukemia.” The good doctor said, “No. She has leukemia. We just need to find out which kind.”

Bone marrow tests take six weeks to come back. Six days before (and about two weeks from my 30th birthday) the results that would tell me which kind of leukemia I definitely had came back, Rat Bastard decided he “didn’t feel the same way about me anymore” and walked out.

Imagine my surprise when the good oncologist didn’t find the “Philadelphia” chromosome he was expecting to see. Still, he stuck to his guns and was really, really sure I had leukemia. He then took a job at MD Anderson in Houston, TX, but insisted I see his other good oncologist every six weeks or so to keep looking and monitoring my white blood count and my screwy red blood cells. After many months passed and my condition worsened with no explanation, the second good oncologist told me, “You are a ticking time bomb.”

Not helpful.

So, my wonderful boss (who was also a good friend, and, as it turned out, was the guy I was supposed to marry!), paid to send my mom and me to MD Anderson to speak again with the first good oncologist, who was now heading up a leukemia department of his very own. Time for bone-marrow tap Number Two, because he was positive that pesky Philadelphia chromosome was there somewhere.

It wasn’t.

I was back to square one. Only now body parts were starting to break. I fractured my foot by stepping out of bed the wrong way. I tore my meniscus— an injury I was told is usually found in professional tennis players—by doing a single jumping jack in a futile attempt to exercise. A new specialist ran a bone density test that showed I had osteopenia, the precursor to osteoporosis. Another specialist discovered I had insignificant, benign tumors on my adrenal glands—something, he told me, I had in common with approximately 25% of the population. But those revelations were the least of my concerns. The depression turned into an all-consuming black hole. For the next three years, not one day went by that I didn’t sob uncontrollably. I couldn’t do my work, because I couldn’t concentrate long enough to edit a simple story. I couldn’t read a book or even sit through a half-hour sit-com. I no longer recognized myself in the mirror. Even worse, old friends and even my own cousin—people I hadn’t seen in a few years—didn’t recognize me either. They literally walked by me as though I were a stranger. My physical appearance was that dramatically different. I would wake up at 5 a.m., ravenous, and I would FORCE myself to wait until 6 a.m. before I would allow myself about a third of a box of Cheerios with non-fat milk. It was the only time of the entire day that I would actually feel “full.” It only lasted for about two hours, tops… but for that brief window, I found relief from constant hunger pains.

Alone, I no longer knew my own mind. I hid away in my craft room and started endless scrapbooking projects that I never finished. The pretty paper and nifty hole-punches somehow made me smile a little. Like many, I would imagine, I started to self-medicate. Prescribed painkillers.

Thankfully, mercifully, my family bonds were stronger than ever. My parents even moved to Las Vegas to be near me. And that guy, my boss, Glenn… though he met me in my 20s, when I weighed 100 pounds, married me in my 30s, knowing I was truly sick, not knowing what illness I had, and at my heaviest. I was 188 pounds on my wedding day, and he made me feel like a beautiful princess.

At some point around 2003, I had yet another new family doctor. Overall, his diagnostic skills were, at best, questionable. He knew just enough to send me to other specialists. But he was generous with his prescription pad, so I continued to see him. I do, however, owe this particular doctor a huge debt of gratitude. He was the first to mention the word “endocrinologist.” I didn’t know there was such a thing.

Many lab tests later, the endocrinologist told me I had too much of something called “cortisol.” She became annoyed when I asked her what that meant. She faxed her notes back to my family doctor. I noticed she had scrawled the word “Cushing’s” with a question mark after it. I told my doc I didn’t know what

Cushing’s was. His exact words were: “Well, I do know what it is, and you don’t have it.”

The endo disagreed, I guess. She had me scheduled to have my adrenal glands removed. Somehow, 10 days before my surgery, my many questions and stubborn attempts to understand why I was going under the knife really pissed her off. I received a certified letter informing me that, due to my “abusive and indignant attitude,” I was “fired.”

Meanwhile, my mom started Googling. She read the symptoms of Cushing’s Disease as though it were a page from my diary. It was a perfect fit. Except that, according to what she had learned, the lab results weren’t making sense. They were pointing to my pituitary gland, not my adrenals. I cancelled the date with the surgeon and headed back to the family doc’s office. He was quite pleased with himself, claiming he knew it was Cushing’s all along. (He still takes great pride in that epiphany. Why let the facts stand in the way of a good story, right?)

Family doc told me it was great news that my pituitary gland was the culprit: All I would need is a highly focused beam of radiation and some salt pills, and I’d be as good as new. He filled my prescription and sent me to another endocrinologist.

This guy was clever. He actually sent me for an MRI. Unfortunately, the MRI showed nothing. He was, however, in agreement with the previous, previous, previous doctor who told me the adrenal tumors were nothing to worry about. I trusted him, because he dropped the name of a renowned neurosurgeon at USC in Pasadena: Dr. Martin Weiss. I did some research. Dr. Weiss was the real deal—a graduate of Dartmouth and Cornell and a professor of neurological surgery. Finally… an honest-to-goodness expert.

Husband and I packed our bags and were off to Pasadena for a venous sampling. Who knew there was such a test? I found myself in the bizarre position of praying with all my might that I had a brain tumor.

Waiting, waiting, waiting…

Dr. Weiss confirmed that the MRIs did not show the tumor, but he did point to a microscopic something-or-other at the base of my pituitary gland that was tilted ever-so-slightly. He explained that he had, at best, a 50–50 chance of finding the tumor and removing it. He also told me that salt pills weren’t going to do the trick.

In December 2004, Dr. Weiss successfully removed the tumor from my pituitary gland.

This is the part of the story where I’d like to say I dramatically awoke with remarkable bravery and perfect hair to a room filled with calla lilies. Instead, my eyes opened to four or five post-op nurses, I was hooked via a tangle of cords to various machines, my mouth was so dry my tongue was stuck to my palate, and I was frantic to find a toilet. Bedpans just don’t work for me and my bladder was going to explode. After much arguing and cursing, the nurses decided unhooking me was safer than allowing my blood pressure to go any higher. They rolled over a porta-potty, I went forever, and no sooner did they re-hook me than I had to go again.

Learned a new term: diabetes insipidus.

The morning after being released from the hospital (prescription for diabetes insipidus filled and at arm’s length), I remember that, for the first time in nearly a decade, I couldn’t finish my breakfast. I was full.

I’d love to end it with that perfect tagline, but…

Back in Vegas, the brilliant endocrinologist put me on the whopping dose of 20 mgs of hydrocortisone a day. Anxious to “jump start” my adrenals, he quickly lowered the dose to 10 mgs.

After more than a year of seeing a cardiologist for my racing heart; a (mis) diagnosis of panic attacks because it felt like I had an SUV parked on my chest; repeated bouts of nausea and dizzy spells; low blood pressure; increased joint and muscle pain; more depression; and a complete neurological work-up for symptoms too similar to MS for comfort; my incredibly insightful endocrinologist told me to stop coming to his office, go home, and praise God because I was “cured.” In what can only be called a surreal segue, he then added that I should also praise God for my inability to get pregnant, because children are so selfish and self-centered that they only degrade your quality of life. Not surprisingly, he retired from medicine shortly thereafter.

It was at this point that I found the Cushing’s Help and Support boards and verified that I was not, in fact, insane.

One doctor’s name was repeatedly touted: Dr. William Ludlam. He sounded like the savior of all endocrine-challenged souls. I was astounded when he, personally, actually took my call. After listening patiently to my story, he informed me that I was not yet his patient, and therefore, he could not and would not offer me any medical advice or instruction over the telephone. He then told me a story of a hypothetical situation in which certain familiar-sounding symptoms would, to a trained hypothetical specialist, be immediately recognized as the brink of full-blown adrenal failure. I took the hypothetical hint, did some quick online research—and (following only my own hunch, rather than immediately seeing a local doctor as I should have done) took a significantly higher dose of Cortef. Within an hour, I felt human—a feeling I hadn’t known in more than 10 years.

Dr. Ludlam made room in his schedule and, the following week, off we went, at last down the road to recovery.

I celebrated my 40th birthday last month. As 2011 rapidly approaches, I can finally say that my adrenal glands are now functioning on their own. I have not had the need for Cortef in more than a year. I have battled the addiction to pain killers and am emerging as the victor. My size 4 jeans once again fit, and while I still fight depression, it is no longer my primary state of mind. Slowly, I’m regaining energy and enthusiasm. My thoughts are clear, my will is strong, my creativity is restored.

I live.

—–#—–

If you or a loved one is suffering with Cushing’s or Addison’s or you believe you might be, and you need to talk, please feel free to contact me with any questions or simply for an understanding ear. I can be reached at mfine@casinocenter.com (please put “Cushing’s” or “Addison’s” in the subject line) or follow me on Twitter @SinCityTweeter. My thanks and ever-lasting gratitude to MaryO, www.cushings-help.com , and all the fellow Cushies who helped me along the way.

Marie C (Marie Conley), Pituitary Bio

November 10, 2013

MaryO Adrenal Surgery, Diabetes, Other Diagnosis, Pituitary, Pituitary Surgery, Treatments adrenal glands, brain, Buffalo hump, Cushing's disease, DI, diabetes insipidus, hair, hernia, hip fracture, pituitary, surgery, weight 2 Comments

I was diagnosed in June 2012 with Cushing’s Disease after almost three years of a variety of illnesses.

My husband and 8 year son have seen me through a brain surgery and its failure, permanent DI, removal of my adrenal glands, a hernia surgery, a severe hip fracture, four additional hospital stays including 10 ER visits.

I used humor to get me through these past couple years (and prayer). I needed to laugh as I gained 81 pounds (while doing a sprint Tri, running a 10k, and working out when I wasn’t on crutches), having hairy arms, a hump on your back and so much more.

I have been lucky enough to continue to work and am blessed with a supportive family and friends. I hate this disease for so many reasons but I am not going to give in to it.

I feel very lucky that someone directed me to this site and I am grateful for the opportunity to not feel alone on this journey.

Joseph (joeysauce), Pituitary Bio

June 19, 2013

MaryO Male, Pituitary, Pituitary Surgery, Thyroid, Treatments ACTH, adrenal glands, Adrenocorticotropic hormone, anxiety, belly, bloodwork, central obesity, chest scan, cortisol, CT scan, cushing, Cushing Syndrome, Dr. Eliza Geer, Dr. Kalmon Post, Fish Oil, Google, headaches, Health, hyperplasia, Inferior petrosal sinus sampling, IPSS, moonface, MRI, neurosurgeon, pituitary, Probiotics, red cheeks, remission, skin, sleep, St. John's Wortort, Stretch marks, striae, testosterone, thyroid, UFC, Valerian Root, Vitamin A, Vitamin C, Vitamin E, wean, weight Leave a comment

Hello everyone. My name is Joe. I’m a 23, soon to be 24 year old male who is (hopefully) in remission from ACTH-dependent Cushing’s disease and two transsphenoidal surgeries.

I’d like to say my journey all started back in November of last year. Though, the past year has been a stressful, anxiety filled year for me with a roller coaster of it’s own. I was working full-time as a web designer at a web firm down the block from me for a little over a year, but was just getting so sick of the grind. I was also dating a younger girl for about 2 years up at this point, who had just left for college last August. Thinking that I was finally going to have a little more time to myself to make and save money and just freedom in general, I was proven very wrong. As soon as she left, the separation anxiety hit me like a TON OF BRICKS. I could hardly sleep, go to work, or even function. I knew the first thing I needed to do was free myself of the miserable grind of work and get back to freelance work. I told my job I was leaving and actually had an opportunity to do some other work with my uncle across the country decorating malls for the upcoming holidays as soon as my two weeks approached. It was a nice break and a good way for me to get away and experience some new things, like my girlfriend was doing. When my girlfriend first went away, I started taking Valerian Root to help me sleep and have been taking St. John’s Wart for about a year and a half to keep the anxiety as it’s lowest. I decided that when I get home from this trip, now that I’ll have a MUCH more free life, that I’d like to cut out all these vitamins that I’ve been taking for years to help with my skin, health and anxiety. Like Fish Oil, Vitamin A, E, C, Multivitamins, Probiotics, etc. I wanted to come home and have an awesome natural routine of exercising, working, and juicing. It sounded perfect. Make money, get fit, stay healthy and feel good. As the end of the trip approached, I was pretty much finished with all the vitamins. We traveled for about a month and a half and was home just in time for Thanksgiving. My girlfriend was home then as well, so it was good to see each other again finally. We were in touch as much as we could be when we were both away and decided to keep things going.

Here’s where things started to change. One of the FIRST things my mom said to me when I got home was “Wow, your face looks puffy and swollen.” I actually agreed and said it’s probably this stuff that I decided to stop taking called “hyaluronic acid”. It’s supposed to make your skin more supple and moisturize from the inside out. I figured that’s why my face was looking that way. I JUST started using it too. As the weeks went on, I noticed that there was a prominent redness in my cheeks as well. My cheeks were usually red like this, and I always thought I had Rosacea, but noticed that they were now red the whole day long, and I could almost see where the redness kind of cuts off. I didn’t pay much attention to these signs, but still was a little concerned.

As the holiday’s approached, I didn’t really get a chance to start working out or running or anything that I planned to do now that I was working home. I was gaining a little bit of weight in my face and my tummy, but just blamed it on being lazy. My girlfriend noticed and would tell me that I’m getting chubby and looking different. It was getting pretty annoying at this point hearing everyone saying that I’m puffy and chubby looking. I then started to work out a little and was running as much as I could outside, even though the winter was approaching and it was getting harder and harder to run. I really wasn’t seeing much progress and even started to diet pretty hard with veggies. The crazy part is that I’ve ALWAYS been such a thing HEALTHY person. Always juicing veggies, always drinking water, always taking vitamins, very athletic, etc. It was crazy that I couldn’t get rid of this belly weight or get my face to slim back down.

This is when the weirdest thing happened…The stretch marks. I began to freak out. I saw these ugly purple lines on my inner thighs and was really confused. I thought…”How can someone my size get marks like this…am I exercising too much?” This was around February, and my girlfriend came home on another break and I remember one morning her mother made a comment and said “Wow, your face is so puffy and red, maybe you’re allergic to something, you look so different” This is when I finally decided that I needed to see a doctor. I decided to see an allergist to figure out why my face is so red and bloated looking. We did all kinds of allergy tests just to find out that I’m allergic to most environmental allergens. In between visits, I was doing my research. I started to Google things like “stretch marks inner thighs” and eventually came across the word “Cortisol”. Then Googling Cortisol, I eventually came across “Cushings”. I started to read the symptoms and began to notice that the majority of them were exactly what I had. The “moon face”, the “striae”, the “central obesity”. Then I realized how bad my sleep was over the passed few months. I thought it was just me being anxious about work, because I would wake up VERY early in the morning and wouldn’t be able to fall back asleep, so I would just get up and make breakfast and hop on the computer. Then I remembered the headaches I’ve been getting, or how tired during the afternoon I’d be. I was starting to make sense.

So one of the visits with allergist, I figured I’d mention the research I was doing. I asked the doctor if he was familiar with the disease. He said he definitely is. I showed him how different I looked a few months ago, and showed him my stretch marks. He was pretty shocked to see, but said it could just be from just eating bad and not exercising enough. I asked him if he could get me a blood test to check my Cortisol anyway. He said absolutely and sent me to a lab a few blocks away. I was very much expecting to see high cortisol levels. Like a fool, I went right after my appt with him, so the blood was taken around 12PM. I didn’t realize then that cortisol should be drawn around 8AM, but anyway…

The next time I came in to see him, he gave me the results. He said “You wanted to know if your Cortisol was low, right?” I said “No, I wanted to know if it is high.” He said “Oh…well, yes, they are a bit high.” He did mention that the RX said for me to have them taken in the morning and was kind of mad that the nurse didn’t notice that and say to come back in the morning. He said they could be high because of the time of the day and maybe the stress because of what I thought was going on. I knew now that I had to take these results to an endo.

This is when I started to mention things to my parents. They knew I was seeing the allergist and I have already talked to them about the cortisol and cushings, but I didn’t really get in depth. Once I had this blood taken, I knew I had to let them know what I think is really going on. I explained that the disease is caused by a tumor in the brain, or in your adrenal glands and they thought I was talking crazy. I was looking for local endos and found one not too far from me. When me and my mother first met with him, I knew instantly I wasn’t going to like him. It seemed I had to introduce myself before he even said anything. When I explained what I thought was going on, having Cushing’s and all, he said “You don’t look suspicious of Cushings at all.” He mentioned that the disease is VERY rare and that he has only diagnosed it about two times in his career. He looked my stomach, the back of my neck and said that when people have moon face, you usually see fatty deposits by the side of their eyes. As much as I didn’t want to hear I have Cushings, I wanted a solid answer to what is going on. He didn’t even ask to see the stretch marks when I mentioned them. He said, “Yes your cortisol is high, so we will do further testing.” I took home the urine test and also had a few blood tests done. Very anxious at this point, a few days passed and we came to see him again. Just as I thought, very high cortisol levels. He seemed very shocked and pretty much stated that Yes, I do have Cushings. He then wrote up multiple RXs for me to have done. An MRI, a CT scan, a chest scan. I was beginning to get pretty nervous. He explained how the disease is very complicated to diagnose and to find where the excess cortisol is coming from exactly. I was becoming very knowledgeable at this point and knew it wasn’t going to be an easy process.

Things started to get a little ‘different’ around the house and with my relationships. I’m actually a triplet and 1 of 3 children. My brother and I are very close, but not so much with my sister. My brother knew what was going on, but didn’t really know much about the disease. I would tell him and explain to him, but not really sure if he was even listening much. My dad was starting to get involved with things and becoming supportive of the changes. I was getting depressed with how I look and felt, and thankful my girlfriend was still away, even though I could’ve used her support…I just didn’t want her to see me like this. Things started to become pretty stale with her and my health was becoming more of a priority. I told her what was going on, but she hardly understood. So I started with the CT scan.

The doctor suspected the tumor to be found my in adrenal glands. Unfortunately, there was nothing to be found. The doctor then took some more blood work and realized that we should be looking in the pitutary. I then had an MRI done. At this time I receiving help from the whole family. My aunts and uncles were doing some research too, looking for better doctors. We live on Long Island, New York…so Manhattan is just a small trip away. It’s said that the best doctors around here are located in NYC. My mom found an endo by the name of Eliza Geer at Mount Sinai Hospital in Manhattan. We were lucky enough to get a appt rather quickly. We were still waiting on the results of the MRI at this point and recieved them the day of the appointment.

We took them to Dr. Geer. Now this Dr. is no ordinary endo. She actually is VERY familiar with the disease and runs a research study on Cushing’s on “Body Composition and Metabolism” in Cushings patients. Immediately, we knew were at the right place. She took a look at all the blood work and could most definitely tell that what is going on is definitely Cushings. She was very impressed with me that I was able to basically diagnose myself, and asked me if I was studying in the medical field, hah. She knew that there was no need for more testing, but now just to figure out the source. We gave her the CD with the MRI results but she had trouble getting the images to show up on her computer. She asked that if we could wait a bit longer, that we could meet the neurosurgeon that she works with, Dr. Kalmon Post, and we would look at the imaging together in his office. Feeling pretty good about the new doctor, we waited a bit in the lobby until they could both see me again. During the wait, I dozed off, but woke up to my mother and aunt talking to a lady in the lobby. She was with her son. After some conversation with her, they found out that he also had Cushings, and has been going through it for several years. He is 20, so a few years younger than me. My aunt asked if it was okay to exchange emails, so me and him have actually been in touch since our surgeries.

Anyway, it was finally time to meet both doctors. Feeling very nervous and anxious, we sat with them and he explained a little more about the disease, and the complications of the surgery, etc. He made a joke about my rosy cheeks and it actually made me feel a bit comfortable with him. He also said how the reversal of the symptoms almost seem magical. I was beginning to feel really good about him as well. He said that he does pituitary surgeries multiple times a week. He then opened the CD and we all looked at the images together. He explained that when there is a distinct tumor found, you will see it quite easily and explained how it would make the gland look in the scan. Unfortunately…we couldn’t find anything. He explained that at this point it could so small that it may never show up on the scan, so he never wants to go into the gland and begin any sort of surgery without being 100% positive that this is the source of the problem. He then explained that there is procedure that completely confirms where the source is…”Inferior petrosal sinus sampling” It sounded pretty strange to me, but I knew it had to be done. As soon as we left his office, we made an appt with Dr. Patel to have the IPSS done ASAP.

A week later we were back for the procedure. What a strange procedure…but all went well. The results came back telling Dr. Post that it’s time for surgery. I think it was another week or so later that we made the appt for my first surgery on May 6th 2013. Both anxious and excited, I was more that ready to get this done and over with. My surgery was late in the day, so I wasn’t in recovery until I think about 6pm and then in my hospital bed until about 8pm. I remember my endo coming to see how I was feeling, as well as my surgeon. Knowing that I was supposed to be feeling flu-like symptoms, I was honest and said that I felt okay. My parents spent the next few hours with me until they had to leave. Unfortunatly, I was not feeling any sort of crash, but just very uncomfortable from the darn nasal-tampon in my nose. The next day the blood results came back from after the surgery and my cortisol levels were still very high. Disappointing news, but pretty much expected. I think they were 77. Though, the doctors mentioned that a second surgery is common and that the levels may be high because of the time of the day. We still kept our fingers crossed that they would still be dropping over the next day. They did come down ALOT the next day, but not in a normal range. I was sent home on the Hydrocortisone, incase that they would continue to drop, though I wasn’t very optimistic at this point. The pathology report did come back that whatever he did remove was all tumor, so that was good to hear.

Still feeling the Cushing-like symptoms over the next few days, I took my week later blood work again just to find out that the cortisol levels went back up. My endo said that I am going to need another surgery. I remember my surgeon explaining how he wants to be as gentle as possible when messing around with my pituitary, to make sure no damage is done to it. So I understood that maybe there is some tumor cells left behind and this time he will get the job done. We were lucky enough to schedule the second surgery only about a week or so later, with a very early appointment (May 20th).

Right before the surgery, the surgeon came to me and my mother and mentioned “Hyperplasia”. He said it’s very rare, but there is a chance that my gland is what’s producing the excess ACTH and not a tumor. He said is going to try his best to determine that and continue to remove any abnormalities he see, as aggressively as he thinks he needs to be. A few hours later, waking up in recovery I felt crazy anxious. I couldn’t stand the oxygen mask so I removed that after a few minutes. I could not wait to be in my bed. Unfortunately, again, I was not feeling the crash. Disappointed again, we were giving it time and hoping again that there were just a delay in the levels dropping. The next two days passed, and my levels were still a bit high. I saw both my surgeon and endo before leaving the hospital, and we spoke about other treatments at this point, but obviously we were going to wait on the near future cortisol results before moving forward with anything else. Me and my family were pretty devastated at this point, but my parents were still being optimistic. Not able to understand how this “amazing” doctor was having a hard time curing me and why it has to be so complicated for me was beyond everyone at this point. Sent home with HC again, everyone was praying for a drop in the cortisol levels. My doctor had me get my blood taken that following Friday with STAT on it. I spent most of that day with anxiety attacks and tears, over the fact that I just didn’t know if I was cured or not. I was feeling pretty dizzy and sick to stomach…but didn’t really noticed that UNTIL…

I received a call later that day from my endo. She first asked me how I was feeling. I told her very anxious and pretty dizzy. She responded with “Good! Because your results came back and your cortisol is at 12.” My parents both jumped up (I was laying in their bed between them…yes, I felt that awful about everything going on) in shock and awe. I was shocked to hear good news for once. She said to continue the HC and that we will be doing follow up bloodwork in about a week. The next blood test approached, with prayers that it would be even lower or at least hopefully in a normal range. This time the levels were a LITTLE raised, to 18…so my doctor felt that at this time we can begin to taper the medication since my levels are indeed high, yet still in a normal range. At this point, we believed that I am in remission and on my way to recovery.

A week later, we went for the two week follow up with both the surgeon and endo. We were able to meet with both of them at the same time. Both doctors said that I am starting to look less cushing-oid, which was relieving to hear. My endo explained that because of the surgery, my Thyroid and Testosterone levels are also a bit low, and that I’d have to go on replacement until both levels are normalized. I figured that this follow up would only be to talk and go over a few things, with not any real results or new good news, but I was okay with that. Though, we did have an interesting conversation with the surgeon.

Dr. Post, the surgeon wanted to explain what was going on with this pathology report. He is known to be one of the top neurosurgeons in the country and has done thousands of pituitary surgeries. He said that I seem to be a very perplexed case of Cushings. From what he can see when he performed the surgery is that the abnormalities do NOT look like tumor cells, but that the pathologist insists that what they look like to them ARE tumor cells. Because of the confusion, he is having my pathology report results sent out to other surgeons and pathologist for further questioning. At this point, he feels that the abnormalities that he removed are indeed abnormal pituitary cells, or Hyperplasia, like he explained to me and my mother before performing the second surgery. From how it sounded to me and my parents, that treatment for Hyperplasia is pretty much the same and that if all of the abnormalities have been removed, then I should be cured. He did also say that during the second surgery, he removed a lot more abnormal cells than he did the first time. Knowing that I perplexed one of the best surgeons in the country, we all felt a bit confused and a little down about things. We spent the rest of the day in Manhattan and headed home trying to keep our chins up.

Well, today I think has been about 2 weeks from the follow up, and almost a month from surgery. I’d like to say that I am seeing changes with my face, but it’s really hard to tell, though everyone around me is saying that I look fantastic. I can’t seem to get rid of the awful bloat belly, though. I have been going to the gym with my cousin for a week or so now, since my body has been feeling ALOT Bbtter than it has the passed couple months.

Last week my endo was away for the week, and being that I have been feeling better, she decided to give me the week off from blood work, which was relieving. I finally received my Thyroid RX yesterday and began it today and will be getting the Testosterone tomorrow. I got a call from my endo today and she is having me get blood work for my cortisol this Thursday. I am praying everything is normal and that I can continue to ween off the HC even more. I’d also like to mention that I going to see a laser dermatologist tomorrow for a consultation to see what can be done about the hideous stretch marks that my legs are covered in.

So it seems at this point I still am not 100% positive that I am in remission and this Thursday’s results should give us a pretty definite idea. I think this just about covers everything you guys need to know about me and my journey and battle with Cushings. I’m sure there’s so much I left out, though I am sorry it’s such a long introduction. I do feel my story is quite unique, being that I basically diagnosed myself and caught the symptoms so quickly. Please, if anyone has any questions or anything they’d like to discuss, PLEASE feel free to post back. It looks me DAYS to finish this and about 6 drafts that I started over a month ago when I was going to introduce myself to you guys before my surgeries…just was never able to bring myself to finish.

Contact Joseph

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Catherine J (Catherine Jones), Pituitary Bio

May 17, 2013

MaryO Adrenal, Adrenal Surgery, Pituitary, Pituitary Surgery, radiation, Treatments adrenal glands, bilateral adrenalectomy, BLA, cushing, Cushing Disease, Cushing Syndrome, gamma knife, Harborview Medical Center, Pituitary gland, radiation, Seattle, Seattle Cancer Care Alliance, University of Washington Medical Center 4 Comments

In November 2009 my PCP diagnosed me with pituitary Cushing’s Disease. His diagnosis was confirmed by an endocrinologist at the University of Washington Medical Center in Seattle, WA in January 2010.

English: Concept of Gamma Knife Stereotactic Radiosurgery (Photo credit: Wikipedia)

In March 2010, I had my first pitutary surgery at UW Medical. My second surgery was in September 2010 at the same hospital. My third surgery was at Harborview Medical Center, also in Seattle in May of 2011. After my husband and I learned the third surgery had also failed I had gamma knife radiation on half my pituitary gland in November of 2011, also at Harborview.

After waiting what seemed like a very long year and a half we decided to have my adrenal glands removed by a surgeon from the Seattle Cancer Care Alliance in May 2012.

I am finally without Cushing’s Disease and looking forward to a “normal” life.

Gina M, Ectopic Bio

May 9, 2013

MaryO Addison's Disease, Adrenal, Adrenal Surgery, Ectopic, Pituitary Surgery, Thyroid, Treatments Addison's disease, adrenal gland, adrenal glands, adrenals, bilateral adrenalectomy, BLA, Blood test, Buffalo hump, Conditions and Diseases, cortisol, cushing, Cushing Syndrome, DI, diabetes insipidus, fatigue, headache, Health, Ketoconazole, Mass General, migraines, mood swings, muscle weakness, pituitary surgery, surgery, sweating, thyroid, UFC, urine, weight 3 Comments

I was diagnosed with Cushing Syndrome in June 1999. At that time my urine cotisol level was 342.

Prior to being diagnosed I suffered for over 7 years with severe migraine headaches. I also had gained 80 lbs, had a moon face, buffalo hump, mood swings, severe fatigue (could sleep 20 out of 24 hours a day), aweful sweats day and night, weak muscles, thyroid disease.

I had pituitary surgery at Mass General because my state didn’t do that type of surgery. After surgery, my levels were still elevated and I was diagnosed with diabetes insipidus.

When I returned home I underwent more tests ie. blood work, 24 hour urines. This continued for another year and during that time my endo put me on Ketakonazal in an attempt to lower my cotisol level to no avail. The medication just messed up my stomache.

In 2000 I had surgery again this time I had both adrenal glands removed. still no tumor had been found. That’s when the worst news of all came. I was told I had Ectopic Cushings Syndrome and had 5 years to live. The reason for this if you my not know is 50% of ectopic tumors end up being small cell lung cancer.

I was also diagnosed with Addison’s disease because of no more adrenals. Today it has been 13 years since my adrenal surgery and I am still alive and no cancer!

Linda, Pituitary Bio

May 2, 2013

MaryO Adrenal Insufficiency, Adrenal Surgery, Bipolar, Diabetes, Pituitary, Pituitary Surgery, Recurrence, Thyroid, Treatments Addison's disease, Adrenal, adrenal gland, adrenal glands, Austin Powers, bilateral adrenalectomy, Bipolar, BLA, cushing, cushing's syndrome, Depakote, diabetes, dog, dopamine, double vision, e. coli, Family medicine, fatigue, fludrocort, Health, heart attack, hydrocortisone, OHSU, Paul Newman, potassium, recurrence, thyroid, Vicodin, vomiting, weight Leave a comment

I Am 52 yrs. old . My sympmtoms began when I was 40 yrs. old. I was at at a yearly physical. I was extremeley athletic. I used to ren 70 miles a week. when I was 17 to 19… dopamine I believe kept me well.

One year prior to my symptoms ..I was 39. I was very fatiquiged..my children were suffwering. They were 6 and 9. They are now 17 and 20. I feel I stopped raising them at this age. If any of you have seen the Sting the movie with Paul Newman obbserve that he dunked his head in ice. I was at Lincoln city , Oregon when I attemted this. procedure. I say procedure and I didn’t even know a tumor was forming on my pituairy gland. Who kneew? Not me. It didn’t even occur to me that a growth was growing in my brain!!

I went from 135lb to 265lb. in 3 months. I was so frightented!!!!!!!!!! My doctor told me to go to an encronologist…very important DOCTOR!!! Most doctors do not have the slighist idea what Cuhing’s is ..Dogs ,horses, and PEOPLE get it. Some doctors are either dumb or totally ignorant. The E. doctor said it looked like I had Cushing’s syndrome. I then made him fall off his chair in laughfter! My family and I recently put a family dog down with Cushing’s disease. I wanted to know if it was contagious?? No, he said wiping his eyes from laughing. He appologigized when I started crying.. I wanted to know how I got it. My dogs was in the adrenal glands. Fatal. We said goog-bye to BUDDY>> My doctor said he hoped I did not have the same dianosis.

After thousands of dollars later..Thank goodness we had great West insuanarce..Get it if you can. Covered everything 100 percent. Discovered a benign tumor on my left pituiary gland. They removed it through my nose . I also had my 9th sinus surgury. It was also from my left nostril. I got fake diabetes. It went away when I left the hospital. The weight started dropping with the help of a nutrisionist. I was taking hydrocortisone. pills. I lost 65 lbs. A few years later my head started hurtimg worse.

After One day of test at a major University OHSU I was diagnosed again with the same tumor . but 3x’s bigger . Surgery through my mouth. Weight came back and some. I asked what my options were? #00lbs, heart attack and death. They told me to remove my adrenal glands. I did. I now have diabetes ,I take 200mg. because my thyroid is so large. Guiess what?? My immunec system is nill.

I wanted to be healthy I loved bananas… get what I got ?? I got the e-coli scare with the spinacach in the bag. E.R. 3 weeks . Everyone in yellow smocks.. No visitors! June 2007… I lost 40 lbs. I was going out to lunch with my husband saw double. Uncontrollable votimiting… E.R. Encronologist. or family doctor. After driving 90 miles an hour 45 minutes away we arrived. I was talking all the way through it . No pulse ..I said am I dead? My doctor said Shut up. No heartbeat. I said am I dead yet? She said shut up agin. I wass vvvvvvvvv teching. I said where are the cameras for HOUSE the t.v. show. I sell novelty neck ties my huband Allen just so happenned to be wearing a Bug’s Bunny tie…I guess you know what i said ..What’s up doc??

The Paramedic behind me was 2x’s larger than my husband He said I was going to the hospital. They put me in the ambulance. Allen asked my husband if he wanted to come . He said he would follow. When they closed the door Allen said if you feel anytjhing hit my knee. 10 seconds later I hit his knee as hard as I could. I felt an elephant!! If you want me to tell you what death is ask me. I died for 5 seconds. plus I was clinically dead at the doctor’s office. My potassium level was7 normal is 4.2 to 5. If anyone has seen Austin Powers drinking poop quadruaple it I attempted to drink it. Started vomiting it. A Doctor was walking by…USE ANOTHER ORAFACE!!!! The butt. I was drowning. Needless to say , my children were screwed up again.. I called the oldest Brandon ,the youngest Nathan and a very nice gentleman if i wasn’t married I would marry him…SHAROn 14, MEGAN 11 and ALLEN!! I now take fludocrt and hydrocortisone @ 4:00 P.M. everydyt. If I miss two consecutive days I will die.

I am also Bi polar I feel their is a correlation with Cushing’s disease. I take Depacote etc. 12 more pills plus hydrocortosone in the morning too! I Have 2 books at home Manic Depressive Disorder. By Fredrick Goodwin and Jay Jamison. Worth reading. Stated Cushing:s disease is derived and assossiated with bipolar. I believe I have been bi polar from birth. Only episodes I had as a child…TRAUMA!!!!! I now have addison’s disease too! What else could go wrong?

By the way, I have a theory bipolar is assosiated chromosome 13. I also think cancer is a virus. Hit or miss. Cushing’s is fatal i not treated properly. Adrenalectomies are the worst . Take Vicatin .I threw it at my husband I did not want to get addicted to it like House. I used ice 24/7. I won’t go into the detatails it was bad. If you do get one , move I used a swifter, and a cane. No wheel chair or death for me!! I’m a fighter!!

Thank you for allowing me me to tell my story. I want to write a book about my experiences. I hope there is a publisher out there so I can get my Life story across!!

Sincerely,,

Linda

Early Detection, Treatment Needed To Reduce Risk Of Death, Cardiovascular Disease In Cushing’s Disease Patients (cushieblog.com)
Know Your Number (cushieblog.com)
Cushing’s syndrome increased risk for coronary arterial atherosclerosis (maryomedical.com)

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